Science Resources RSS Feeds
|
 |
 |
 |
| View Larger Image | Voices of Scleroderma Volume 1 | Paperbackby International Scleroderma Network (Author)
| List Price: | $19.99 | | | Available: | Usually ships in 24 hours |
| | Binding: | Paperback | | Publisher: | International Scleroderma Network | | Page Count: | 340 Pages | | Publication Date: | May 13, 2003 | | Sales Rank: | 633,350rd |
|
EDITORIAL REVIEWS |
Product Description
A comprehensive book of scleroderma medical and support information, with articles by world experts in scleroderma and caregiving, as well as over 100 true stories from those affected by scleroderma. |
CUSTOMER REVIEWS (Average Customer Rating: 5.0 based on 1 review)
|
Dr. James Seibold, Chair of ISN Medical Advisory Board by Shelley L. Ensz (Edina, MN USA)  5 Stars
January 31, 2005
This is Dr. Seibold's introduction in the ISN's Voices of Scleroderma Volume 2, the second book in this series. Dr. Seibold is Chair of the ISN Medical Advisory Board. He is Professor of Internal Medicine and Director of the University of Michigan Scleroderma Program in Ann Arbor, Michigan, USA.
We welcome you to Voices of Scleroderma, a major contribution from the International Scleroderma Network (ISN). Scleroderma occurs in only around thirty people per million per year. Therefore, since it is so uncommon, patients have great difficulty finding access to expert care or even another similarly afflicted patient with whom they can share their experience.
Access to high quality reliable modern information is crucial to patient well-being and outcomes. The realization that "you ARE NOT alone" has therapeutic value in its own right.
I am Chair of the ISN Medical Advisory, a scleroderma researcher, and a member of the Scleroderma Clinical Trials Consortium. The SCTC is an international charitable organization of academic centers dedicated to elevating the pace and quality of scleroderma research. The SCTC works closely with the ISN in the education of both patients and caregivers.
I have been interacting with the ISN on a variety of fronts, most notably in our shared goal of providing up to date and accurate information to the scleroderma community on a worldwide basis. Over the past six years, I have watched the amazing development of the site that Shelley Ensz created at www.sclero.org. I have seen it evolve from her personal site of one page to become the ISN site, now encompassing over one thousand pages in eighteen languages.
The ISN site has brought together both the medical and patient communities from throughout the world. According to the recent TrustGauge Report of Internet traffic, it is in the top one hundred thousand of all Web sites, far ahead of all other scleroderma-related sites.
In my view, the primary reason for this stellar success is the high quality of site content, as well as the multilingual, international reach, which is also an important driving force.
Remarkably, the ISN has a small team of committed, dedicated volunteers who have seized the amazing capabilities of the Internet to provide exceptional, worldwide service and assistance to patients with scleroderma.
More notably, from this enterprising site, the ISN has in turn developed into a thriving nonprofit organization. It is really a classic example of reversing the order of development. Rather than an established organization simply developing a Web site, a remarkably effective Web site developed into a full-service charitable organization.
The ISN expands upon its cyberspace outreach by publishing Voices of Scleroderma. Every volume in this book series features articles from esteemed scleroderma researchers as well as over one hundred patient and caregiver stories, from sixteen countries, and in five languages.
The ISN enjoys a well-deserved reputation for top-notch medical and support information and services from both the patient and medical organizations throughout the world. Today, over five dozen dedicated volunteers, including many doctors and translators, operate the ISN.
Our ISN Medical Advisory Board includes illustrious experts in this field, such as Dr. Luis Catoggio of Buenos Aires, Argentina; Dr. Marco Mattucci-Cerinic of Florence, Italy; Dr. C. Stephen Foster of Boston, Massachusetts; Dr. Janet Pope of London, Ontario; Dr. Frank van den Hoogen of The Netherlands; and Dr. Shinichi Sato of Kanazawa, Japan.
Dozens of other renowned leaders in their field also generously lend their expertise to the ISN, primarily as contributing authors, medical editors, scientific advisors, and translators. All of our ISN volunteers met and work only through the Internet. Their efforts have made quality medical and support information on this rare disease available worldwide.
I hope you find this book of value, and that you also consider offering support to the ISN. It is only with a partnership of patients and scientists in a concerted worldwide effort that we will solve the riddle of scleroderma.
| |
SIMILAR PRODUCTS |
| Voices of Scleroderma (Volume 3)
by International Scleroderma Network (Author)
“I highly recommend this book for patients, caregivers, and medical professionals who want quality medical information and support for scleroderma and related illnesses. “Access to high quality reliable modern information is crucial to patient well-being and outcomes. The realization that ‘you ARE NOT alone’ has therapeutic value in its own right. “The nonprofit International Scleroderma Network (ISN) and its website at www.sclero.org enjoys a well-deserved reputation for...
| 
| Scleroderma: The Proven Therapy that Can Save Your Life
by Henry Scammell (Author)
Scleroderma, which affects as many as 400,000 Americans, starts off like skin cancer but is far more deadly. This new edition is updated with new information about the best therapy for this disease, including the results of the landmark first, and a new, second clinical trial of the only therapy to report reversal and remission of this deadly disease.
| 
| The Scleroderma Book: A Guide for Patients and Families
by Maureen D. Mayes M.D. (Author)
The Scleroderma Book has long been considered the leading source of information for patients suffering with this disease. Now comes the Second Edition of this highly respected volume, extensively revised by Maureen Mayes, M.D., the leading authority in this field. Writing specifically for patients and their families, Dr. Mayes draws on her extensive experience treating scleroderma to provide up-to-date, practical information that will help patients manage their symptoms and improve their...
| 
| The First Year: Scleroderma: An Essential Guide for the Newly Diagnosed (The First Year Series)
by Karen Gottesman (Author), M.D. Daniel E. Furst (Foreword)
Scleroderma-a chronic autoimmune condition that causes hardening, thickening, or tightening of the skin and attacks the heart, lungs, kidneys, and gastrointestinal tract-is extraordinarily difficult to diagnose and can take a huge toll on the psychological well-being of the individual. From the first moment of her diagnosis, author Karen Gottesman took charge and educated herself on every aspect of her condition. Now, as a "patient-expert," she guides those newly diagnosed step by step through...
| 
| The Official Patient's Sourcebook on Scleroderma
by James N. Parker (Author), Icon Health Publications (Author)
This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to scleroderma (also Familial Progressive Systemic Sclerosis; Morphea; Progressive systemic sclerosis; Systemic Sclerosis), from the essentials to the most advanced areas of...
|
|
|
|
